A longer overdue update

13 Mar


Hi everyone,

We’re really sorry for the radio silence over the last year.    There has been much happening, though not entirely as we expected…

At the start of last year, Wes had been accepted for SDR surgery in the USA.  However, because he’d been in hospital over Christmas with pneumonia, we’d had the (unwanted) opportunity to see how he coped with longer spells on a ward.   Because of this, we were starting to feel it might be better to delay surgery for another year (he was still only 3!) and let him grow up a little before flying out to St Louis for a multi-week spell in hospital.

His consultants in Leeds had also suggested that an updated MRI scan would give them the best possible chance to see how his cerebral palsy had developed.  However, because of his bout of pneumonia, they were keen to take his adenoids out – to improve his breathing – before the general anesthetic.  Wes also had a slightly wonky eye, meaning he was on list to have this squint fixed.  Yikes.

Over many months, the net result of this was three trips to the hospital for surgery / general anesthetics, which was traumatic (more so for us, than Wes!).  Thankfully, everything went very well – the folks at the LGI were brilliant: Wes’ breathing improved, his eye is now working perfectly and, in autumn, he finally got his MRI scan.

Whilst this had all been going on, we’d been trying to knock down the garage and turn the space into a ground floor bedroom for Wes.  This has proved frighteningly difficult (Yorkshire Water had thoughtfully run 4 sewers under the house!), so we decided to move to somewhere more suitable for Wes’ future needs.

So, three general an aesthetics, one house move and dozens of regular checkups later, we finally got the results of the MRI.  Crushingly, this revealed Wes had another condition – “dyskinesia” – which hadn’t been properly detected before.    Dyskinesia essentially creates unpredictable movement which, unlike Wes’ existing spasticity, couldn’t be fixed by SDR.  In fact, SDR could make it far worse, taking away the stiffness and leaving Wes unable to co-ordinate any movement.

As such folks, for now, SDR surgery in the USA is off the cards.

Whilst the St Louis surgeons will still operate, the view of the UK team is it could make Wes’ quality of life much worse.  This has been a very difficult call to make.  Positively, there is a good chance that this might change as medical science develops or Wes’ condition is reviewed.  For now, Wes is focusing on strength, physio and generally just being a little boy.

Everything that everyone’s kindly raised is still safely tucked away for Wes, for when it’s needed.  We’re still hopeful that, eventually, SDR or a similar operation may benefit him.  Whilst it’s a long way off, if the money doesn’t get used by Wes’ 25th birthday, the funds with Tree of Hope will be passed on to other children with disabilities.

In the meantime, putting hospitals, scans and doctors to one side, Wes is otherwise doing brilliantly.  He goes to an amazing nursery, has lots of little pals and will be starting school this September!  He’s happy, chatty and increasingly willful!

This will probably be the last update on this site for a while, but we’ll keep it running for any major developments.   Again, huge thanks to everyone who has helped so much.


wes sig

(& helpers…x)


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